The moment you have been waiting for is here! Today, we took a monumental leap toward a future where U.S. families affected by ectodermal dysplasias can get their dental care covered by health insurance. Sen. Tammy Baldwin (D – WI) announced that she and Sen. Joni Ernst (R-IA) introduced the Ensuring Lasting Smiles Act (ELSA) in the Senate today! You can read Sen. Baldwin’s announcement here and Sen. Ernst’s here.
Rep. David Young (R-IA) and Rep. Collin Peterson (D-MN) simultaneously introduced ELSA as a bill in the House of Representatives. When passed, ELSA will end decades of struggle families affected by the conditions have endured battling their insurance companies.
We did this together! Your emails and phone calls to Congress, your trips to Capitol Hill for Ectodermal Dysplasias Advocacy Days, your visits to your local legislator’s offices…all of these things helped us achieve this milestone!
It was Aidan Abbott’s experience with ectodermal dysplasia that influenced Sen. Baldwin’s decision to take action.
“Aidan’s story has inspired my work on this issue to guarantee that individuals born with congenital anomalies have access to the comprehensive health treatments and coverage they need,” said Senator Baldwin. “Despite covering all of his other medical care, his family’s insurance continues to refuse to cover his dental care needs, forcing them to spend thousands of dollars out of their own pockets. That’s why I’m introducing this bipartisan legislation to close this loophole and make sure families like Aidan’s can get the health care they need at a price they can afford.”
This legislation will not only help individuals with ectodermal dysplasia, but all birth abnormalities. It would close an insurance coverage loophole for people born with congenital anomalies who need complex oral restorative care. Right now, states have existing statutes providing benefits to replace missing body parts caused by congenital anomalies. But the problem is when the missing body part is teeth.
Health plans often deny claims and appeals for oral- or dental-related procedures–such as orthodontia and implants–which are often crucial to the overall success of treatment, claiming these services are cosmetic or covered by dental plans. As a result, our families can spend years filing appeals. Many simply give up and go without care.
This is another victorious milestone on our advocacy journey that began less than two years ago. It’s truly been a team effort and we have many people to thank. We are grateful to Sen. Baldwin for partnering with us for the past year to write ELSA and for leading the effort to get it introduced.
We thank the Abbott family from Wisconsin, the Nelsen family from Minnesota and the Steele family from Iowa for forging relationships with these Congressional co-sponsors and sharing their stories.
We also thank Senator Ernst and Reps. Young and Peterson for joining her. Our Family-Driven Legislative Advocacy Committee has also done a great job in providing leadership and action.
Karl Nelsen, a member of the NFED Board of Directors and Family-Driven Advocacy Committee, was instrumental in securing Sen. Peterson’s support.
“ELSA means that I can sleep knowing that my dental care will be included in my health plan and that my dental needs due to ectodermal dysplasia won’t bankrupt me. It is peace of mind that I’m not in this alone. It also means that my daughter doesn’t have to fight for her dental care as much as I have had to.”
In This Together
Because ELSA will cover all congenital anomalies, we are excited to have the following organizations advocating for ELSA with us:
- American Academy of Dermatology Associates (AADA)
- American Academy of Neurology
- American Association of Oral and Maxillofacial Surgeons (AAOMS)
- American Association of Orthodontists
- American College of Surgeons
- American Dental Association (ADA)
- American Society of Plastic Surgeons (ASPS)
- Children’s Hospital of Wisconsin (CHW)
- EveryLife Foundation for Rare Diseases
- Rare & Undiagnosed Network (RUN)
While today is a momentous occasion, we still have a long road ahead. The bill will now go to a committee for the next round in the process to become a law.
Family involvement was key in getting ELSA introduced. Now, it will be even more critical for every family affected by ectodermal dysplasias in the U.S. to contact their members of Congress and ask them to co-sponsor ELSA. In the next week, we will email and post information on how you can take action.
We renew our vow to you to not stop our advocacy efforts until ELSA passes. We will fight for this bill to become law so that you, our families, get the coverage you need.
For now, join us in celebrating another great day for our NFED family!Write Your Members of Congress Now
To hear more, listen to my Facebook Live:
18 comments on “ELSA Introduced in Congress”
This is absolutely a huge step to help our NFED families! Hope is always greater than Fear! Thank you to everyone who has worked for years towards this huge struggle for so many people! God Bless!
This is so amazing! I am committed to lobbying our congress to pass this into law! Keep us posted and we will keep calling & emailing!
Thank you, Deb, for advocating for ELSA! We’ll be announcing in the next few days what you can do to help.
I am ecstatic to hear this news!
This is great news! We will be on the look out for suggestions regarding how we can best advocate for this bill.
That info will be coming out next week. Thanks for your willingness to help!
Thank you so much for working so hard on this! It is life changing to us and I hope that someday it allows me to get the help I need!
I plan to call my congressman and senators so that they support this bill.
Thanks, Jenny. We will let you know next week what we would like you to do and what information to share. Stay tuned!
This is so exciting. We’re so grateful to the NFED for its tireless work, and to all the families and individuals who advocated in person, by phone, by email, etc. On to the next challenge: Making sure ELSA becomes a law that will benefit countless families!
Thanks for the kind words, Jonathan. You and your family helped advocate for this, too! Together, we’ll make sure it gets passed.
Congratulations to NFED and thank you to all who advocated for this important legislation. I’m looking forward to suggestions for lobbying.
Thanks, Kriss! Check out ways to advocate at https://nfed.org/get-involved/advocate/ways-to-advocate/#/. We will be announcing later this week what you can do. We appreciate you help and support. ~ Jodi, NFED Director of Marketing and Communications
Great news – but are there details on the “coverage”. My company insurance only covered DI as dental. With a$1500 annual cap it was not much help. We need this genetic condition covered under medical !
Hi, Patrick. We agree. That’s the purpose of ELSA. This law pertains to medical insurance not dental insurance. Hope you will advocate with us and ask your legislators to co-sponsor ELSA. Take action at https://nfed.org/get-involved/advocate/ways-to-advocate/#/. Let’s do this! Thanks, Jodi, NFED Director of Marketing and Communications
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Thank you so much! I just left voice mails for each of our senators and emailed President Trump. This would be wonderful for our family and I know for so many, many families!
Thank you for advocating! We encourage you reach out to them on a regular basis. You can use our advocacy tool to make it easy: https://nfed.org/get-involved/advocate/ways-to-advocate/. Gratefully, Jodi, NFED Director, Marketing and Communications